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Discussion Starter · #1 ·
At the moment I'm not even sure if I should be posting on these message boards. I have been investigated at least twice in the past for lupus because of a malar rash and non-specific systemic stuff (muscle or joint pains, gastro problems, etc). I also have a personal and family history of autoimmune disorders (mum with RA, several family with coeliac, etc). Because ANA and lupus anticoagulant were negative, I was told it wasn't lupus, although I have never seen a lupus specialist. I am positive for antiphospholipid antibodies, though I'm not sure how positive. In the last two years I have had far more neurological problems (muscle spasm, nerve pains, electric shock sensations, etc) and have been investigated by neuros as well (negative MRI, Lumbar puncture, etc), and am waiting on yet another neuro referral.

However, I feel that lupus is now showing itself as a possibility again with a number of symptoms that seem more in common with lupus than MS or other neurological disorder. I have a blotchy patterning on my legs that looks like livedo reticularis, the malar rash is still there (comes and goes a bit but never completely disappears) and the whites of my eyes look awful - kind of like episcleritis though I've not had a doctor say that. I'm also having far more mouth ulcers again, having largely stopped getting those when I went on the gluten free diet for coeliac disease.

The biggest problem at the moment is breathing difficulties. I have terrible chest muscle pains that aren't really being held at bay by the baclofen I take for leg muscle spasm. I was also getting very wheezy on breathing out, and ending up having coughing fits. I'm now getting progressively more congested and still having coughing fits frequently during the day, especially when chest muscles are sorest already. I have pain at the bottom of my right lung when breathing in, and pain at the top and into my shoulder when breathing out. This has been going on and getting worse for 4-5 weeks. At first I got a ventolin inhaler, then a few days ago I have also been given a steroid inhaler and antibiotics. I've now had three days of antibiotics and they haven't done a thing. I'm only coughing up tiny bits in the morning, and it doesn't look infected. I also don't seem to have a temperature, though I'm having awful night sweats (which could be due to menopause). The really odd thing about all this is that it eases most when I lie down flat, and especially lying on my left side, which I wouldn't expect at all with a chest infection or asthma. The only thing that really does seem to relieve problems is actually diazepam. I have that for if muscle spasm really gets to be a problem, but I definitely don't want to be taking it every day or long term.

Does this sound anything like a lupus related lung problem?
 

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Hi cemc,

Your lung problems could be related to Lupus but they could also stem from another source, sorry not much help I know :( but they do need further investigation if they don't clear up, probably with a Pulmonologist. I know you are recovering from a recent bout of flu and for sure that's not helping :hugbetter:


The blotchy skin rash (livedo) can most certainly occur with Hughes Syndrome and you said you were positive for anti-cardiolipin antibodies. However some patients who don't have Hughes have a Lupus diagnosis because of the presence of those antibodies and ANA so it doesnt mean Hughes unless there are criteria filled for Hughes. And it doesnt mean Lupus unless there are criteria filled for Lupus..............confusing and complicated I know. That's where trying to get to a Lupus specialist would be a distinct advantage to you if you are going to get anywhere with this. So I hope you can achieve that.

love
Lily
 

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Don't worry about whether or not you should be here. You are welcome.
Going through diagnosis is very hard.
As has already been said not all Docs. are Lupus Specialists.
x Lola
 

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Discussion Starter · #4 ·
Just to clarify. I haven't had flu recently (in fact not for years), or even a cold. The breathing problems came on firstly with the chest muscle and arm muscle pains, and have progressed from there. I don't have a raised temperature and no other cold or flu symptoms.

I'm going back to GP when I have finished the antibiotics (which haven't made any change to the cough or congestion) so will see what he says. We don't have pulmonary specialists here - the best I could hope for is a general physician at our local hospital.
 

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I think it is a good idea to return to the gp and address all of your concerns.

I do hope that the breathing problem resolves. Of cours if it is not getting better I would call right away.

There are many people that belong to this site that are undiagnosed so don't ever feel that this isn't the place for you.

You are welcome here by all, and everyone is so friendly and helpful here.

I would make out a list of all of your symptoms, both past and present, even if you think not related. I also would take pictures of any swelling, redness or rash that you may have. Sometimes it takes a while for all the pieces to fit together and the pictures can help in the future especially if the rash, etc. is not present.

I hope that you can resolve some of these questions with the doctor when you return and I would definitely say "is it a possibility that I could have something autoimmune as it does run in my family?" maybe seeing a rhemotologist would be a good idea too along with someone for your breathing problems.

Wishing you good luck at your next appointment.
 

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Hi cemc,

My apologies, I must have confused you with someone else - confusion reigns supreme for me lately!

I would definitely go back and see your GP as soon as you finish these antibios or sooner if you get worse. Most general physicians in a hospital setting are fairly adept at lung problems so that's another possible first step in sorting this out. We will try and help so don't hesitate to ask any further questions.

love
Lily
 

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Discussion Starter · #7 ·
Update after seeing GP

Saw GP again this morning. The antibiotics didn't make any real change. He has listened to lungs again, and no crepitations. My oxygen saturation thing is normal. I'm still coughing like crazy, especially when I move about, and whistle and wheeze when I breath out. He is going to try me on another cough suppressant to see if that will stop the coughing so much, and check me again on Monday.

In the meantime I have realised that all this breathing difficulty really has got worse as my chest muscle/arm muscle stuff has got worse during this latest relapse. I have a really good arm twitch (a bit like my legs used to be before going on Baclofen), and electric shocks down arm, and get quite bad tight muscle pains which are almost spasms going through from my back to upper chest and through shoulder down right arm. These are definitely not heart related pains. I can only think that it is the chest/arm muscle stuff that is making it more difficult for me to take a deep breath, and is causing diaphragm muscle spasm making me cough. I guess I just have to sit out this latest relapse and when the muscle stuff starts coming right, the cough may well come right too. I am still waiting for another neurology referral to a different hospital, so that might just give me some answers too. It is definitely hard for me when I have both the family and personal history of autoimmune disorder, some lupus symptoms, and some MS symptoms, but not enough of anything to get an easy and quick diagnosis.
 

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:) Hi, and welcome to this site, you will meet a lot of wonderful people here and we all offer our support. I would
suggest that you let your GP handle your chest and caughing problems, but it sure sounds like you need a good Neurologist to figure out the rest of your symptoms. This may be nothing, butlast November my hubby and I both got our flu shots, both at the same time. I never had any reaction except for being sore for a few days. But my hubby
at the end of Nov. began what he thought was a cold. To make a long story short, the cold went to a sinus infection, meds didn't work, and there is nothing more that he can take,and he is still suffering with it today. Maybe that could somehow be a clue to the beginning of your lung problem? I don't know. I wish you well and good vibes, to get well.:wink2:
 
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